In a Different Key

by John Donvan

  Rimland’s goal was to produce a document that would examine the refrigerator-mother theory as scientifically as possible. If the theory held up, he would admit it. But if, on the other hand, the evidence was weak or lacking, then he would go on the attack.

  It was not even a close call. As soon as Rimland began teasing out a few basic facts about the world’s known population of autistic children, the mother-blaming concept completely collapsed. This started with his discovery that nearly every mother raising a child with autism was also bringing up children who did not have the condition. It made no sense that these women, presumed to be more poisonous than wasps, would only sting once.

  Rimland also noted the complete failure of psychotherapy to make autism disappear. Presumably, an illness that was psychogenic in origin would yield to such treatment. The attempt had been made several times, Rimland found, and always with dismal results. In one group of 42 children, the 29 who underwent a supposedly high-quality cycle of psychotherapy showed no progress at all. They “went nowhere,” according to the study Rimland read. The remaining 13 children had received either inadequate therapy or none at all. Ironically, only some children in this second group made enough progress to start school.

  The refrigerator-mother theory presumed that some sort of trauma had occurred early in the life of the child. This might include the birth of a sibling, a stay in the hospital, or the absence of a parent. But there was no pattern of such inciting events in the lives of the 230 children he had read about. On the flip side, neither could Rimland find evidence of children who had acquired autism as a result of such events occurring early in their lives. He also found that the much-reported observation that parents of autistic children were cold, distant, and self-absorbed personalities did not apply to at least twenty-three of the families in his database, who were described as noticeably warm, vivid personalities.

  As for the mothers observed handling their child with uncertainty in a doctor’s office or answering a clinician’s questions in a voice that sounded flat and spiritless, Rimland reasoned that these behaviors, taken as evidence of “coldness,” could just as plausibly have been the result of exhaustion and confusion, a result of the child’s seeming indifference to his mother’s loving words and touches.

  Yet another possibility that occurred to Rimland was that the behaviors observed in parents might be clues to a genetic component to autism. Perhaps both parent and child were manifesting variations of the same underlying predisposition, inborn in both, passed down from parent to child as a matter of inheritance. Or perhaps, if not strictly genetic, it could be the result of something in the environment acting upon both parent and child with differing severity.

  At bottom, Rimland’s database was throwing off all sorts of clues that autism might be rooted in the human organism itself, and none to suggest that bad mothering had anything to do with it. He was sure that the psyche was beside the point, and that autism was biology.

  Knowing he was getting out of his depth, the experimental psychologist went back to reading, and began to teach himself genetics, biochemistry, neurophysiology, nutrition, and child psychology, which he had specifically avoided in graduate school, because he never saw it coming in handy for the career he had planned. To reassure himself, perhaps, that he was not wandering too far off course himself, he decided to start running his ideas by a noted expert in the field: Leo Kanner.

  Rimland started writing to Kanner at least as early as 1960, with a deference befitting the situation. Rimland was a young, unknown experimenter with a lot of questions he wanted to ask. Kanner was the world’s leading child psychologist, Berlin-trained, with four decades in practice and a condition named after him in the textbooks. Indeed, in his earliest letters, Rimland was downright fawning. “Only Churchill comes to mind when I think of writers,” he wrote of Kanner’s scholarly prose, “whose…rhetoric demonstrate[s] similar mastery.”

  The flattery worked. Kanner clearly read Rimland’s letters closely, as well as at least one “brief paper presenting my findings in very rough form.” He encouraged Rimland to keep going.

  Over time, as their relationship developed, their correspondence took on a more relaxed tone, like that between mentor and protégé. Kanner must have known that Rimland’s investigations were moving the younger man in a direction that would correct the sullied record on mothers and autism—much of which had been Kanner’s doing in the first place. Kanner had not yet found the opportunity to recant. But he was making amends another way: by taking Rimland seriously, nudging him along in his efforts, encouraging him to continue developing the theory that autism was organic in nature. It was an extraordinary act of mentorship toward a man he had never met and whose work risked discrediting his own to some extent.

  Rimland hit a wall, however, when he approached Bruno Bettelheim. Rimland’s first letter to Bettelheim was a request for names of families he could contact in the Chicago area, where Rimland had found a lab that could run blood tests for some chromosome studies he was trying to organize. By this time, 1965 to 1966, Bettelheim had read some of Rimland’s writing and knew he was being directly challenged on his own psychogenic theory of autism.

  “I…shall give you no help,” Bettelheim wrote in response to Rimland’s request. He told Rimland he could never cooperate with someone capable of such “ill-conceived…erroneous and biased judgments.”

  Rimland wrote a second time, asking Bettelheim for copies of “any reprints, reports or references” related to his cases—a routine professional courtesy. This time, Rimland hit a much deeper nerve, possibly on purpose. Rimland knew that while Bettelheim wrote often for the popular press about autism, he never exposed his work at the Orthogenic School to peer review. Even the progress reports Bettelheim was supposed to provide annually to his main funder, the Ford Foundation, had shrunk in size over the years to just two or three pages.

  Bettelheim’s response was scathing. He informed Rimland that the progress he was making with the children in his care required no written proof: what he saw with his own eyes was evidence enough. Then he threw in a dash of analysis of Rimland himself: “You see, feelings are unimportant to you, and to me they are the most important thing in dealing with human beings.”

  —

  BETTELHEIM WAS LIKELY rattled because, in 1964, Rimland had pulled all of his research together and turned it into the book that would become the definitive takedown of the mother-blaming theory of autism.

  Putting his findings between hard covers had been Gloria’s idea. She had watched Bernie’s “paper” grow, over four years, into a treatise hundreds of pages long. Sometime during 1962, she mentioned that he should start thinking of it as a book. Rimland took her point and began pulling it all into shape, with chapters and a title—Kanner’s Syndrome of Apparent Autism. Only one copy existed at that point, and it was all in Rimland’s own handwriting—he didn’t even know how to type.

  He approached his secretary at the navy lab, asking if she would be willing to take on the job for some extra cash. She agreed, and over the course of several nights and some weekends, she typed her boss’s words onto a “ditto master,” which Rimland then ran through a ditto machine—cranking out duplicates one page at a time. Once the “books” had been stapled and the envelopes stuffed and stamped, Rimland headed to the post office with dozens of thick envelopes addressed to researchers and psychiatrists around the country, specifically ones he hoped would take the time to read his work, including Bettelheim and Kanner.

  He also sent a copy to a small scientific publishing house, Appleton-Century-Crofts. The timing was a fluke; the firm’s publishers had recently come up with the idea of giving out an award that year, honoring the best new “distinguished manuscript in psychology” that it could find. They wanted to make the award an annual prize, no doubt to bring some honor and prestige to the firm itself, so they hoped to find a truly dazzling and deserving manuscript to start with.

  Rimland’s manuscript must have struck whoever r
ead it as just the thing they were looking for, because soon enough, Rimland received a letter informing him that he had won the Century Psychology Series Award of 1962. There was no check in the envelope—it wasn’t that kind of prize—but the letter promised something of far greater value to Rimland than any amount of cash: publication.

  Two years later, in 1964, after a good deal more editing, revising, and narrowing down, Rimland’s book finally made its public appearance with a new title. It was called Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Kanner’s name wasn’t in the title any longer, but he gave Rimland an immeasurable boost by agreeing to write a foreword to the book. There could be no better endorsement than one from the man already known as the “father of autism.”

  In his foreword, Kanner shared that he and Rimland had been in touch for four years already, and that Kanner himself believed the book’s contents deserved a fair hearing. His tone made it obvious to readers that, on top of professional respect, Kanner also liked Rimland. The “father of autism” was anointing Rimland a member of the family.

  —

  WHEN AN OBSCURE specialist house prints a small run of a technical book with a subtitle offering a “Neural Theory of Behavior,” it can’t be considered a publishing event. At the time Rimland’s work appeared, in 1964, there was no splash made—no talk-show bookings, no newspaper reviews. There were some brief notices in an academic journal or two, which came across as cordial and mildly interested, but those took months to reach print.

  Despite the lack of fanfare, it was clear that there was an audience out there who knew about Rimland’s book. It was parents who were snapping it up—mothers like Audrey Flack who saw, in Rimland’s book, the possibility of deliverance from the story of the ice-cold mother, which had caused them so much guilt and invited so much disapproval from outsiders. Flack and others read Rimland and could see at least the beginning of the end of that damaging stereotype.

  Rimland later heard that parents were actually stealing his book off the shelves of libraries, and not just to read it. They were ripping out the final pages and mailing them to Rimland. Years before the concept became popular, he had accidentally made his book interactive.

  He had included a seventeen-page questionnaire, bound between his last full chapter and the start of the bibliography. It comprised seventy-six questions, a “diagnostic checklist”: “Is the child destructive?” “Will the child readily accept new sweaters, pajamas, etc.?” “Does he consistently use the word ‘you’ when he should say ‘I’?”

  He called it Form E-1—the “E” standing for “experimental.” This was, of course, his area of true expertise—test design and experimental psychology. It was intended as a draft, to show his fellow psychologists a prototype version of the kind of survey he believed could pinpoint autism in children and distinguish it from, say, schizophrenia. Naturally, he wrote, such investigators would recognize that “the form is designed for completion by the children’s parents.” Parents read that as an instruction that they were to fill out the form, and they took Rimland’s closing line—“correspondence with the author is invited”—to mean he personally wanted to see the results.

  It was only a week after the book was published that the first letters started arriving. Not everybody out there was pulling the library trick. Those who happened to learn of the book’s existence early had ordered it outright from Appleton-Century-Crofts, but they too were scissoring out the questionnaire and sending it, completed, to San Diego. Some chose to type out the whole questionnaire instead; others sent carbon copies around to other families they happened to know with a child like theirs. Sometimes Rimland opened an envelope to find a single sheet, with a name, an address, and the answers to his seventy-six questions.

  Autism had no central gathering place, and the book had only word of mouth to drive its marketing, so it was hit or miss as to whom Rimland heard from. In upstate New York, for example, Ruth Sullivan, as active as she was, would hear nothing of the book for quite some time.

  Along with each letter Rimland received came a story. Mothers and fathers unburdened themselves to him, the only person they’d ever known carrying the title “Dr.” who also knew which questions really applied to their kids’ unusual natures. Not all of them realized they were writing to a fellow parent, because Rimland never mentioned the autism in his own family in his book. He’d done that so as not to undermine his credibility among scientific and professional readers.

  The parents only knew that they’d found a sympathetic expert, who then turned out to be one of them. Rimland, for his part, treated each one of these letters as the beginning of a relationship; there was not a single family who did not receive a long letter in Rimland’s handwriting in response, and most ended up getting a phone call as well, long distance from San Diego. Some would come to know Rimland as a dear friend.

  Right from the start, Rimland recognized what these parents represented—the beginning of a movement. In the same way that Ruth Sullivan, in the smaller orbit of Albany, New York, began emerging as a force by organizing mothers, Rimland now had a connection to all these families, whose numbers climbed into the several hundreds as the months passed and their letters continued to arrive in his mailbox. Soon Rimland began organizing his navy travel schedule, which took him to bases all around the United States, to squeeze in visits to the homes of these parents. Sometimes he would pull together several families at once, giving them the comfort of knowing they were far less alone with autism than they had thought.

  These families were giving Rimland something else vital as well: data. As their answers to his Form E-1 continued piling up on his desk at home, Rimland found himself, unexpectedly, the holder of more raw information on more cases of autism in children than anyone anywhere—far more even than Kanner, who was in the habit of calling his Baltimore clinic autism’s “clearinghouse.”

  This allowed Rimland to start working on studies of his own, particularly in the area of possible treatments. In 1965, he completed a special one-year program at Stanford University’s Center for Advanced Behavioral Research. Largely on the strength of his book and the publisher’s prize, he’d been awarded a one-year fellowship there, which came with no obligations other than to think and write on whatever interested him—with free secretarial support as part of the package. Naturally, he upped his reading and writing on autism.

  His stature in the field of autism was growing exponentially, to the point where, in a few years, the Salt Lake City Tribune would refer to him as “one of the nation’s leading authorities on autism,” and the Oxnard Press Courier would call him “a recognized authority on communication and behavioral disorders.”

  More important, his argument about the nature of autism as the result of something organic was making headway. When Washington Post writer Ellen Hoffman put together a short piece about autism in July 1969, she wrote about the conflict of views between the “two major schools of thought on the causes and treatment of autism”—essentially Rimland versus Bettelheim. Hoffman didn’t take sides. For the first time, the two men—one a parent, the other a blamer of parents—were being presented as public equals.

  —

  BERNARD RIMLAND HAD the standing and credibility, and Ruth Sullivan had the drive and skills to organize. But in 1964, he was in San Diego, she was in Albany, and neither knew the other existed. It took a TV show, and an autism dad neither of them knew personally, to help them find each other.

  Robert Crean was a playwright and a television scriptwriter during the last years of TV’s first Golden Age, when networks staged live, intelligent, challenging dramas that tended to set the bar high for everything else—for science-fiction shows like The Twilight Zone and courtroom dramas like The Defenders, each of which Crean wrote several scripts for.

  Shortly after one p.m. on Sunday, February 7, 1965, a show called Directions 65 aired on ABC. The episode was called “Conall,” and it was about an eight-year-old boy of that name
who, according to the television listing, was “severely retarded.” Actually, Conall had autism, and he was not an actor. Robert Crean, who had written the script, was his father.

  The program aired, telling the story, through still photographs and tape-recorded interviews with Conall’s many brothers and sisters, of how the entire family was affected by their younger sibling’s autism. Little noticed at the time was how truly groundbreaking the program was: this was the first instance of network television broadcasting an extended profile of a person with autism. Once again, it was a parent who was behind the precedent-setting effort, motivated, one of his sons would say later, by the passion to have his family’s situation understood, both the good and the bad of it.

  There was no television in the Sullivan house. Ruth had banned it, having decided TV was bad for the kids. But that afternoon, an excited relative called to let her know that she had just seen a show about autism, and that the boy in it had reminded her a great deal of Ruth’s son Joe. Disappointed that she had missed something so monumental, Ruth decided to track down Crean himself. When she finally got him on the phone, it was a long, spirited conversation—the kind autism parents had on those rare instances when they first found one another. Crean kept referring to the “Rimland book,” which he had just finished reading. When Sullivan confessed to having never heard of it, Crean explained to her that this book was very important, that it was the first thing he’d ever read on autism that wasn’t the same old nonsense about mothers being to blame.